TRAIN UP YOUR CHILD IN THE WAY HE SHOULD GO...

We do Sunday School at home for the boys.  

The boys have many opportunities at church to participate with typical children: Wednesday Night activities, Children's Church, and special events like VBS.  However, for their weekly Sunday School, we felt it was more important for them to learn about the Bible each week with lessons that are adapted just for their needs.  Participating in weekly Sunday School at our church means the boys are just really learning how to sit and be quiet while teaching is happening that is not at their level or adapted to their needs.  

I am not saying this to be critical of our church's Sunday School.  We totally understand that not everything offered can be adapted to our 2 boys.  

We are perfectly happy to do Sunday School on our own and then plug the boys into the other church activities I mentioned above.

On a side note, I do wonder if the Lord is prompting me to offer a special needs Sunday school for the community ...seems like a big responsibility that makes me nervous to be in charge of, but I do feel a tug on my heart that this might a need for many families...praying about that...  

The boys have enough opportunities in life to learn good behavior in group settings.  We wanted to make sure they have a good opportunity to learn about God in a setting that is conducive to their learning style.  

So for the past few years, I have been preparing a Sunday School lesson each week.  I haven't purchased any curriculum.  I find what I need or get ideas online.  Everything I use is FREE!  Our Sunday School takes about 30 minutes.

Here is our format:
1. Read/Tell Bible story using their children's picture Bible
2. Watch YouTube short video of Bible story- there is an amazing selection out there- FREE!
3. 2-3 YouTube kid Bible/Sunday School songs- there is an amazing selection out there-FREE!
4. Worksheet/game about Bible story if I can find, or sometimes I make one of my own
5. Bible craft- one I find on the internet or I make one of my own
6. Academic portion: however I can, I try to do a YouTube video, game, and worksheet about a letter, number, or a learning concept that ties into our Bible story.  For instance, if we are studying "The Wall of Jericho", I might do some work on the number 7.
7. Object lesson if I can find online or make one up of my own
8. Online book that pertains to the concept we studied in Bible story.  For example, when studying about "Fall of Man", we listened to the book No David to talk about good/bad choices.  The reason I do online book reading is so I don't have to worry about finding/checking out library books in advance.  I can just easily access books on YouTube.
9. Prayer time- boys pray out loud and then I close in prayer.
10. The next day,  the boys show their work to Andrew so he can review the lesson with them.

This fall I noticed the boys retaining some of the concepts about God-Jesus-Salvation so I decided it was time to go through the gospel message with the boys.  

I decided to use the colors of the gospel- black, red, white, yellow and green-as our curriculum.  

I thought I would share this 6 week course on our blog.  Please enjoy the next 6 blog posts!

THANKSGIVING THOUGHT

I think this says all I want to say about Thanksgiving!

A STORY FROM HEAVEN

This narrative showed up in several of my Facebook posts this morning. I do not know who wrote this to give them credit, but I thought it was too precious not to share (It's been edited to add our boys names).

“We’ve got an issue here ”the quality control angel called out.

“What’s the problem?” asked God, in a voice that already seemed to calm the concern.

“It looks like an extra chromosome – one, two – yes, right here, an extra one.”

Now smiling, God answered, “That’s not a quality concern. It is a distinction. The manual addresses it. You’re new on the line, aren’t you?”

“Why yes, this is my first day,” apologized the angel – searching through the manual for any reference to this.

“I’ll talk you through it…there are just a few assembly modifications. First, locate the hug sensors. Do you see the dial?”

“Yes, right here. Oh, I think I tickled him.”

“Turn it up.”

“How much?”

“All the way.”

“Done.”

“Now locate the two smile triggers – they are located on either side of that cute little button nose.”

“I found them.”

“Adjust them a little closer to the surface. Closer, closer, perfect!”

“Is that it?” Asked the obedient angel.

“Almost,” answered God. Now, very gently, open his heart. That’s it. Measure two, no, make it three extra scoops of love.”

“Will it fit? He's so tiny!”

“Oh, these little hearts stretch incredibly. It will fit.”

“Done. Is that it?”

“One more thing. Move him from the random distribution belt to the select premium belt. These little ones aren’t given to just anyone.”

“There. He's done and ready to go,” announced the angel.

God stepped over, as if to inspect the handiwork of this new angel on the line. But that wasn’t His intent. Instead, He picked up this little one and held him close to His heart. Holding him for so long the angel became concerned.

“Is he alright? Did I do everything as you instructed?”

Still holding him close, God said, “He's perfect. I just find it hard to let these special ones go, for they are Heaven to hold.” And He gently kissed his cheek and sent BEN AND JONAH to our hearts.

 

Our little gifts from heaven!

IMPLEMENTING WHAT WE LEARNED

In the previous post, I discussed some things I learned at a recent seminar I attended about "Sexuality and Preventing Sexual Abuse for Individuals with Down syndrome."

I decided we needed to come up with some guidelines regarding appropriate affection to start teaching our boys now before they hit puberty.  

A hug from one of our cute little boys who both look age five (even though they are actually 9) is still probably appropriate.  

But it will not be appropriate when our boys start to turn into young men.  Then an unwelcomed hug/kiss could make someone feel very uncomfortable, and even cause our boys to get into trouble.  I do not want this for our boys ever!

Also, the boys need to start understanding what are appropriate shows of affection so that they are not taken advantage of by someone who intends to hurt or abuse them.  Again, I do not want this for our boys ever!

I think the challenge of this, especially in the school setting, will be to get everyone on board and be consistent.  

I feel bad because this is another "thing" I am asking school to help with for our boys (they do sooo already), but I have to remember the boys' safety and well-being has to be my primary concern.  Hopefully, I can convey my appreciation to the school for helping us in this area along with the importance of these guidelines for our boys.

Please remember people with intellectual disabilities are sexually assaulted SEVEN times the rate of people without disabilities.  That is why I feel we MUST address these issues to keep the boys safe!

To start with, here is an incredible video that I think is a great resource for the grown ups in the boys lives as well as the boys themselves:

Click HERE for "Appropriate Touch" Video 

Second, here are the affection guidelines that we feel comfortable for family, friends, acquaintances, and strangers.  

Click HERE for Appropriate Affection Guidelines for Individuals with Down Syndrome

Here are some other resources that I might use as we go over these guidelines:

Songs:
1. "Personal Space" song
2. "Family Members" song
3. "Friends" song
4. "Good Manners" song

Books:
1. Mommy Hugs book
2. Daddy Hugs book
3. Best Friends book
4. Suppose You Meet a Dinosaur: First Book of Manners book

Worksheets:
1. "Personal Space Camp" cut and paste
2. Understanding Love-Like-Polite

HARD TO HEAR BUT...

This weekend I attended a seminar put on by the Down Syndrome of WI and the Down Syndrome Clinic of Children's Hospital.  They do a seminar usually in the fall and spring, and all of the ones I have attended have been excellent.  Topics over the years have been potty training, behaviorial/ compliance issues, IEP issues etc.  

I am very thankful these resources are available to us.

The topic for this past weekend was one I have been avoiding and in denial over for the past few years: Sexuality and Prevention of Sexual Abuse.  

It is very scary to think about the challenges our boys might face going through puberty and then as adults.  Now they are cute little boys who act like little boys.  As with my 3 older typical kids, it's hard to think of them growing up and not being as easy to relate to and watch over.  You know the old saying: "Little kids, little problems.  Big kids, big problems."  Plus the special needs aspect just adds a whole new layer we didn't deal with for our older kids.

So I put on my brave face and attended the seminar this weekend. It was excellent and gave me much to think about.  Some of it was hard to hear but was still very valuable information.

Here are some of the main points:

1. Two common myths that surround people with Down syndrome that cause the area of sexuality to be sometimes difficult and tense to deal with.

a. MYTH #1 People with Down syndrome are asexual.  Sexuality is not an area of life that they will ever have to deal with.  Believing this myth means people with Down syndrome don't get access to good information and support to help them navigate through the minefield of emotions and feelings they have.  It also sets them up to be vulnerable to abuse because they may not know what is safe and acceptable behavior.

b. MYTH #2 People with Down syndrome are "oversexual", thus causing problems and concerns.  Believing this myth puts people with Down syndrome at risk for having their behaviors misinterpreted when it may just be an innocent behavior with no bad intent behind it.  And there is also the risk of them not getting good information and support to help them navigate and learn appropriateness in this area.

2. Sexuality feelings and bodily changes often follow chronological age, not developmental age.  This means people with Down syndrome might start puberty way before they have the ability to understand the changes that are happening to them.  This makes education in this area a challenge and one that will require lots of adaption to make it something they can understand.

3. People with intellectual disabilities are sexually assaulted SEVEN times the rate of people without disabilities.  This is scary!  Here are some reasons people with special needs are so vulnerable to sexual abuse:
a. Isolation and deprivation of attention and affection- not a lot of friends.  Any attention is better than no attention.
b. Lack of  Education:Not aware of rights, Not educated about abuse, Not educated about their body, boundaries, healthy relationships etc.
c. Dependent on Others- they need people in their lives to help them function.  What if a bad person tries to act like they are there to help them?
d. No Sense of Privacy because so many people have been involved in their lives in some very personal areas of life.  This sets them up to think anybody can be involved in private areas of their lives.
e. Learned compliance.  We work so hard to get our children with Down syndrome to listen and obey.  The negative side of this is if they think they can/should trust and listen to anybody.
f. Lack of control of life choices.  People with Down syndrome are use to having decisions made for them.  This leaves them vulnerable to letting someone else control this area of life too.
g. Everybody is a friend.  People with Down syndrome may lack an understanding of different levels of relationship with people.  Everyone is "love" worthy which sets them up to be fooled into being loved when it could really be abuse.

So given this information, what were my take-aways from the seminar?

1. We need to start educating the boys about body parts, privacy, and safety.

2. We need to educate them that only certain people are allowed to be involved with them in a personal way for hygiene reasons and health care reasons. 

3. Keep that hygiene/health care circle of access as small as possible as much as you can.  This means as few people as possible being involved in private personal care.

4. We need to start more private personal care in the home: closing doors, etc.

5. We need to identify what types of affection for what levels of relationship are appropriate for our boys. This means figuring out who gets hugs, who gets a kiss, who should be side-hugged vs. frontal hug. Who should be a high-five or wave.  This might not be needed for them at age 9 yet because again, they are sweet little boys, but down the road, a hug or kiss from a 15 year old pubescent boy might not be a very good choice.

6. We need to be aware that the downside of constant demand for compliance is our child might think its ok to obey any adult or feel like he doesn't have the power or control to say "No" to a dangerous situation.  

Lots of good information although a bit scary to think about.  

This information was provided by Terri Couwenhoven, Milwaukee, WI, MS, CSE and Pam Malin, Green Bay WI, disability consultant. 

Sexuality and Prevention of Abuse Seminar Information

GREAT NEWS AT IEP MEETING!

We had Ben's annual IEP yesterday.

What a positive and uplifting meeting!

In a nutshell, our little Ben is doing great at school!

The team stated that Ben is learning and working at a 5K level.  

Areas he is making good progress:
1. Reading: sounding out words, learning sight words, and reading comprehension. 
2. Math: recognition and counting up to 60, simple addition and starting subtraction.

Probably the area that most surprised and impressed us was that the social behavior goals/issues in the IEP can now be removed.  The team feels Ben acts appropriate for a 3rd grader with Down syndrome.  He will continue to have supervision because he is not 100% trustworthy (are any of us though?).  But as far as behavior being a concern for Ben, he has made enough improvement in how he handles himself that the school doesn't feel it needs to be part of his IEP goals.  

We are so proud of Ben!  He has had to adapt and transition to so much these past 4 years.  It hasn't been easy for him, and there were times we wondered if he would be able to handle things, but slow and steady wins the race!  Congratulations Ben!

The other highlight was to hear how much his speech and language has improved.  This little boy has quite a command of the English language considering he only started to learn English 3 1/2 years ago. What an accomplishment.  

We are so proud of Ben and so impressed with our team at school.  Their support and dedication to Ben's education and well-being are so greatly appreciated!  

Thank you Lord!

We love our Benny!

  

THROUGH THE EYES OF JONAH

Every once in a while, you hear a weird news story of someone claiming an object looking like something famous.  For example, a potato chip that looks like it has a picture of Jesus on it.  Or two years ago, the cheeto that looked like Harembe the gorilla.  Interestingly enough, CNBC reported that cheeto sold for $100,000 on Ebay.  Someone must have a lot of extra money laying around...

Anyway, today our family had a "potato chip Jesus" moment.  We were eating frozen pizza for lunch.  Jonah started talking very excitedly about eagles.  Remember, eagles have been an obsession for him since this summer.  (Why?  We don't know.)  But today at lunch, we really couldn't make the connection between his pizza and eagles.  Until we noticed he was pointing at the bottom of his pizza slice.  This is what he was pointing at.  It really doesn't take much imagination to see the eagle on the crust.  Pretty amazing actually!  

Then after the good laugh we had about his eagle pizza, Jonah decided to come up with an eagle costume for himself.  Quite clever, really- a brown scarf around his neck and a white cloth on his head.  This kid!

  

Maybe we should all take the time to look for potato chip Jesus or eagle pizza.  After all, isn't finding elephants in the clouds or star gazing one of your favorite kid memories?  Why do we stop doing those things as we grow up and "mature"?  Seems like somethings we should keep in our lives no matter how old we are.  I think the boys will be a good reminder of those things for us over the years.  

Now go open a bag of chips or make a pizza, and then start looking!

If you're interested, here's the Harambe cheeto.  Personally I think Jonah's pizza is more valuable.  Too bad he ate it!